Saturday, August 25, 2012

Seeing Things a Little Differently

Blue Mountains, Australia
^not my photo :)

Friday we visited Joseph's new classroom for the walk-through. I saw something that I haven't seen since before his diagnosis. I watched Joseph in the middle of a group of typically developing kids of his own age.

Just before Joseph turned 3, my wife and I had to put the kids both in daycare for a few hours a week while I was in school and she was at work. That's when we were told that he needed to be evaluated for developmental delays. One day, when I arrived to pick Joseph up, I approached the classroom and saw them through the window. The teacher was sitting in a chair reading a book to the kids. There were probably 6 to 8 other kids sitting attentively in a semi-circle in front of her. And on one end of this row of children, Joseph laid on the floor, rocking gently from side to side, with his hand stuck in the back of his shirt fidgeting with the tag.

After his diagnosis, the only times I've seen him as part of a group of peers has been in his special needs pre-k class, which was half developmentally delayed kids and half typical peer models. It was frequently hard to tell which kids were which, but Joseph always stood out as he was consistently the most "high-spirited" in his class. But the classes were generally pretty small, and Joseph didn't seem so different from the other kids.

So Friday, Joseph visited his new classroom and his new teacher along with most of his new classmates. Dublin is an inclusive school system, so he will be in a general education classroom and taken out to their special ed "resource room" by his intervention specialist as needed. So the new teacher (who was Maria's Kindergarten teacher two years ago) took all the kids to her classroom. She introduced herself and then took the kids on a short tour of the room. Joseph got distracted by something halfway through and got left behind. After the tour, the class had a little mini-circle time. The teacher had them all introduce themselves by name (which Joseph is very good at: "My name's Joseph!"), then she read them a story about the first day of Kindergarten, and she talked to the kids about the story.

Listening to Joseph's peers talking, articulating their understanding of the story, the contrast made me realize just how far he still has to go to "catch up." It was sobering, but not discouraging, depressing or disappointing (probably in part thanks to Celexa and Wellbutrin.)

We're at a point of new beginnings with Joseph. On Monday, he starts Kindergarten and will be surrounded by 90% typical peers for the first time in two years. Also, we are finally getting his ABA program started. We're so close, we had the start-up training scheduled and our psychologist had to leave town suddenly and it got postponed the day before it was supposed to happen. The point is, my resolve has been strengthened, and I'm more confident than ever that he is on the precipice of great progress.

For example, this morning he told me that last night he dreamt of unicorns. That was pretty remarkable, it is the first time that he's told us anything about his dreams. He asked me if I dream about dragons. Then he asked his baby sister what she does at night. :)

Friday, August 17, 2012

Mini-post: Free Stuff Your Kid Might Like

Joseph doesn't get obsessions to the extent that some people with autism do, but he does tend to get hyper-focus on things for short periods of time (until he discovers something more interesting comes along.) Right now, he loves maps and prefers the paper ones (that he can somehow refold correctly!)

Across the street from my therapists office is a AAA location. I got a AAA membership from my folks last Christmas. I remembered that back in the old days, before MapQuest, AAA gave members free maps.

I was early today, so I stopped in to check it out. They do still give free maps to members, and guidebooks too. Maria and I loaded up on maps to give Joseph as rewards. I think we might also use a trip to AAA to pick out his own map as a special reward.

Monday, August 13, 2012

How to Use Tech to Help Manage Your Time

I promised a couple of months ago that I would write about how I use tech to make my life as a special needs parent easier. The system I use can be used by any busy person really (and it is). Of course I started a post, got distracted and then totally forgot about it until I came back yesterday to post about something entirely unrelated. So I'm going to try again. I'm not an expert, I just think I have found a system that works for me. So take from it what you feel would be useful in your situation. I'll be glad to offer what advice I can if you need to adapt what I've done to meet your own unique needs.

There are two main components to my scheduling system:
  • a smartphone (iPhone or Android) or an iPod Touch
  • a GMail account
Everything I do is on a shoestring budget. If you can't afford a smartphone, look at used iPod Touches. They have all the same calendar features. Our first iOS device was an 8gb 2nd generation iPod Touch for which we paid $80 on Craigslist. Even if you have a non-smartphone, if you can receive text messages, you can add and edit appointments at home, and get text message reminders. And GMail accounts are free.

Both iOS and Android devices will allow you to directly access your Google Calendars through their own calendar apps. I'm not going into detail here, but you can find configuration instructions for iOS, and since you have to enter your GMail info into your Android phone, it does the rest for you.

Once I had a GMail account and an iPod Touch, I created multiple calendars in GMail that I could view concurrently. There are calendars for me, my wife, Joseph, Maria, Anna, and my work stuff. Whether I'm viewing my calendar in a web browser or from my mobile device, I can choose to view all the calendars, some, or one. When I'm scheduling a new appointment, I just have to look at that day and I see a color coded schedule so I can make sure I don't double-book someone and I have enough travel time (promptness is very important to me). See this YouTube video that some other helpful person made, and which I've embedded below.

Once you have your calendars set up, you can add repeating events, like your weekly OT and SLP appointments. I've got two kids in speech therapy, one weekly and the other bi-weekly. Without this, I would be totally lost. After you've created a repeating event, you can make "exceptions", where you edit a single instance of the event, or delete it, without changing the rest of your series. So your SLP is on vacation, just delete that instance of the event.

GMail/Google Calendar can remind you about your appointments in several ways. If you're using an iOS or Android device, a pop-up is probably the easiest way. In any case, I prefer to be notified 24 hours before an appointment, and then again 1 hour before. Though I'm considering switching from 24 hrs to 12 hrs for the first reminder. Anyway, you can learn how to change your default reminders here. That way, when you create a new event it will have the default reminders already set.

Finally, you can share your calendars on an individual basis with other GMail users. My wife and one of our aides have GMail accounts, so my wife can see and make changes to all of our calendars, and our aide can see Joseph's calendar (which includes events that tell us which aide is scheduled for what time.) That way, if Joseph has an appointment that is outside of his regular routine, or he doesn't have an appointment that he would normally have, everyone with access to the calendar can see that.

Please ask questions. I'm sure there's something that I've failed to mention here.

Next time, I'll be writing about how I use a scanner an Dropbox to keep all the mountains of paperwork, forms, and questionnaires organized, and I'll share how it's saved my ass.

Friday, August 10, 2012

Does Autism Suck?

I read this blog post from another autism dad. It's complaining about people who say that they "wouldn't change their (autistic) child for the world." I was resharing the link on Facebook, but my comment started to get lengthy so I decided to see if I could eke an entire blog post of my own out of this idea.

I'm very concerned about what autistic self-advocates have to say. My son can't get philosophical about his diagnosis yet, so I listen to what people like Ari Ne'eman and Temple Grandin have to say about it. The impression that I get, generally, is that high functioning adults with autism would not choose to be neuro-typical. But that's over-simplifying things. I don't know quite so much about Ari, because no one has made a biopic about him yet, but Temple Grandin has always suffered from crippling anxiety. You can't tell me that if she could take away that anxiety and leave everything else the same that she wouldn't do it. She just wouldn't want to give up the strengths her autism gives her to get rid of the deficits and challenges.

I've got my own psychological diagnoses. I have been diagnosed with ADHD, depression, anxiety, etc. The ADHD is the only one that I think it's fair to compare in this situation. ADHD has benefits and disadvantages.  Whereas depression and anxiety, they just suck all the time. ADHD lets me hyperfocus on a task, whether it's reading a fascinating book or trying to solve a problem or just researching a subject that I'm curious about. ADHD also kept me from getting decent grades in any math class I've taken, ever. Well, ok, except geometry. I got a B in that one. My graduating GPA in high school was 1.666. But I digress. (That's the ADHD too.)

If I could snap my fingers and not be ADHD anymore, would I? I can't say for sure. If I could snap my fingers and not have trouble focusing on stuff that I find boring? In a heartbeat.

Joseph's expressive communication is pretty limited. It's far better than it was two years ago when he was diagnosed with autism and he was effectively non-verbal, but he doesn't come home from school and tell me what he did that day without a lot of help, and he never tells me about his classmates unless I remind him who they are.

Joseph also has a genius level IQ and extraordinary spatial reasoning skills. He builds wonderful creations with his LEGOS and K'nex, or out of cardboard boxes and tubes. His teachers and therapists are always talking about how they expect him to become an amazing architect or civil engineer.

If I could choose for him, would I choose for him to be hitting all his developmental milestones right where the docs say he should, have a 100 point IQ, a C average in school, etc, in exchange for him being able to communicate more effectively? No. I don't think so. And I think that's what people are talking about when they say they wouldn't choose to be neuro-typical, or for their child to not be autistic.

But a little more talking would be super. And a little more awareness of danger. And it would have been nice to have him toilet trained before his 5th birthday. And I'd love to be able to take him to the store and not have to worry about him disappearing at warp speed if I let go of his hand for a moment.

It doesn't mean I love my son any less than I would if he was some abnormally normal kid. Every rose has its thorn. Except now they have these genetically modified roses that actually don't have thorns or something. But that breaks the metaphor that's supposed to anchor this whole post, so let's forget about them.